Buddy Walk 21 October

Last year was the first Buddy Walk organised by DSA (NSW). I couldn't go as it coincided with the twins birthday and we didn't want their birthday to focus on DS. It was by all accounts a great success. This year it is on the week after their birthday so we are there with bells on - Helping Hannah Jump!

Georgia's smile

Phil Davidson is another Aussie who has written this song for his daughter Georgia - the link in the title is to Down Syndrome Association (NSW) as he has given them a link to the song - it is great - well worth checking out. I think you can tell listening to the two songs - who has the younger child with DS.

Acceptance

Steve Passfield has this song for his son Micah - I am off to listen to his other stuff.

Last Sunday in pictures. Yup, planting some veges, mulching, jumping, cooking with playdoh ... and best of all - the day ended with chocolate!

Where we spend far too much of our time ...

There are times when I quite enjoy grocery shopping - especially if I have money and the fruit and veg is good. All too often though it is a chore - and I really don't like to spend my 2 days home with the kids shopping - maybe it is time to revisit Coles online?

Twins Dad turns 40 and my Father is 65

I miss having my parents nearby. Especially when things go bad or when a special event such as Dad turning 65 happens and we are so far apart. Happily that is not the case for P and we had a lovely family dinner for his birthday. On Sat he and I even managed to go out for a romantic dinner while Nan and Pop looked after the brats.

Hannah is going well

Hannah is doing so well at the moment. She had a ball at EI this morning - she loves to choose the painting and drawing activities the best. Group time is also lots of fun for her. She loves the singing and gets really involved. She was very disappointed today when Felise chose to sing 'heads and shoulders' rather than Johnny works with one Hammer' - and when it was her turn she immediately chose Johnny - barely glancing at her other options. We use an Australian phonics called Ants in the Apple and she did really well on the d and the h - which we have been practising at home.

This afternoon her ST and her Sp Ed Teacher came to visit her on her own turf and I think they are pretty happy with her play - we are particularly trying to encourage her expressive language. The brat can sign like a trooper but I still have to really coax more than one word at a time out of her. So now there is lots of 'go ask ... if they want x or y" with the aim that Hannah will be encouraged to use more than one word utterances to participate in these games.

Daniel Miller - A man who triumphs

Jennifer at Pinwheels has a link to a Vanity Fair article (I have linked it int he title of this post) that discusses Arthur Miller and his refusal to acknowledge his son Daniel, born with DS. It reminded me that I had read a bit about this earlier in the year. It is a story that haunts me. It is so tragic. Art, schmart - it still makes me think less of Arhtur Miller.

Because I am technologically incomepetent (and can't work out how to link to the Feb post) I have just cut and paste it here:

Feb 07:

While I was at the eye doctor getting Hannah's vision checked, I met a mum, grandma and little boy called B. B is the same age as Hannah - only he is not sitting or crawling as he has cerebral palsy. He had the same hair colour as Hannah so naturally he caught my eye. He also had a lovely face. We were just passing the time chatting. B has a big brother J who is 7. J looks like a big version of his little brother - his Mum showed me her wallet photo of both boys - J had a big gorgeous grin, red hair and freckles. He is in a wheelchair, doesn't communicate verbally and is fed via his stomach. He too has CP.

I can't imagine what it must be like for that family. In many ways I am sure their life is pretty much like mine, in other ways it must be very different. As I drove home my mind was racing. I can't say that I felt sad exactly - emotional yes - there were tears in my eyes. Mostly though I was thinking about that woman's optimism. I recognised it of course because I share it too. Then I thought about fate - that great wild beast beyond our control. That woman's optimism was palpable. Her photoes of her sons showed each boys uniqueness and her pride in them. Sometimes choices are not better than fate. There is of course no prenatal testing for CP. They told me that. The mother also said that she knew her chances of having a child and then another child with CP were higher than average. I guess that is what made the word 'optimism' come so strongly to mind.

I have been thinking about Arthur Miller and his son Danny - the one he never mentioned in his biography, who was institutionalised (he would only be a few years older than me now) and who was visited regularly by his mother but never by his father - according to the excerpts I read online. I am in no place to judge A Miller - that isn't what this is about. On my drive home yesterday I kept thinking about him and then B and Js Mum. Miller lost on his choice and perhaps he died not knowing that but I can't help but think that those who have and still care for and love Danny Miller know it. Maybe optimism is what Arthur Miller needed more of.

Edited to add:
And what of Danny's mother - apparently she visited her son regularly - yet he did not attend her funeral. What hidden charms must that man have had to get her to leave her child so?? Unimaginable. Unbelievable. I hope Danny has a good life now - he certainly deserves it.

Hello Upsidedownlife/Homealonemom.

I am very excited to welcome homealonemom to the blogging community. She has an older daughter (a bit of a traveller from what I hear) and 13 year old twins, yes, one with Down Syndrome. I am really looking forward to hearing about her life and picking up bits of advice from her experience. You can find her via the title of this post. Welcome.

Working Bee at the family home on Sunday

Kit has a best friend at child care. His best friend, Toby, has a baby brother not yet one - named Lachlan - so on Saturday night when they were bathing their babies and I asked them what their names were (these dolls have been called 'baby' since they first got them years ago!) Kit says something like Blockie and Hannah says something that sounds like 'Bikkie'. I couldn't understand where they had got quite such whacky names from until I ran into Toby's mum when I was picking them up from childcare - and she had Lachie in her arms. Kit had been telling her that he had a new baby at home too so I think she was also wondering whether she needed to congratulate me!
While I was at the Downsed conference - P was at home - dare I say 'in charge'? Anyways it looks to me as if his little angel is demanding 'cake' in this photo:

Downsed

The conference I went to organised by NSW DSA with Downsed UK was great! The inclusion message came through loud and strong! It is something that we don't do very well here yet - I came away feeling a greater commitment to obtaining a mainstream opportunies for Hannah. Still it won't be easy. There was lots of talk about language and numeracy - and lots of ideas on how to help our kids use their strengths and to help strengthen their weaknesses. I got to catch up with lots of otehr parents I know from the same EI service as Hannah and from NSW DSA involvement. So yes a tiring, useful day with lots of positives and it almost goes without saying I know - but a fair amount of guilt - I really should be home making flashcards etc and engaging Hannah in 'learning' activities more than I do ...sigh ... I know that isn't their intention but still ... I felt a bit like a naughty scholol girl who hadn't done her homework!

On a more positive note - Hannah's PT was thrilled with her progress when she saw her. hannah has very loose ligaments - she has a definite wonky walk - but such determination to try things and keep at them. We are instituting weekly wheelbarrow races with her and Kit (for upper body strength) as well as some other activities - for when I am not using the flash cards and story books with ehr I guess - never mind encouraging the various types of play, getting her fine motor drawing and cutting skills up to scratch ... sigh ... do I need to say that the level of stress blew out witht he usual domestic argument of 'who does all the work around here?'!!!

And back to bad news - Hannah did well for the PT today but her hearing is worse than the last time it was tested - so now I am off to the GP to see if by some miracle it is simply an infection that can be treated with antibiotics (she has already had 2 courses of them this winter) or be referred to an ENT - and from there ??? I don't know - gromits? The audiologists were very impressed with ehr manners though - they had given her a lovely loud Banana in Pajama to play with while they tried to look in her ears - and when it was time to go and they asked if she was going to leave the toy - she walked over and put it back ont eh chair where one of them had got it from for her - such excellent manners! I was rather impressed that she clearly remebered their duracell bunny playing the drum from her last visit and kept looking over at it whether there was sound or not!

So then it was off to the shopping centre to buy a small toy for each brat - Kit because he did a 'big poo' on the toilet this morning and Hannah bear for being so good at her ear appointment even if she failed the test.

Twins can fix it - yes we can!
When nothing is something.

I have been in the depths of marking major research projects for my students - finished at midnight last night YAY!!!! Life is just so busy at the moment - we never seem to get a weekend with nothing on. Even when we think it is about to happen like this one - I remember (last night) that I am booked into a paretn workshop all day tomorrow. It has Sue Buckley and Julie Hughes form Down Syndrome Educational Trust (UK) presenting. Then my SIL rings todya wanting a working bee at the fmaily home on Sunday ... so another busy weekend I guess.

P took the twins to their music class last week and will do so again tomorrow. It was lovely to see his pride as he told everyone we spoke to on Sat and Sunday last week how Hannah was the BEST one there. And he's right. She is. She watches the teacher, follows instructions, does all the actions etc. I already knew that - watching his paternal pride was a treat.

The weather has really begun to warm up so in the little free time at home we have had we have had the twins out in the garden planting seeds and seedlings - various herbs, some carrots, tomatoes etc. I hope they grow!

We visited some friends a couple of weeks ago. Hannah and Kit loved playing with their little girl Lucy. Hannah discovered one of Lucy's dress up outfits - complete with fishtail, and thought she looked very good indeed...

and the Fifi look too:

Thanks Christina from Prince Vince ...

Tonight's STAR decides to leave the mirror in the music room and perform for Hannah and I in the lounge room ... Note the dog is anxiously waiting for P to come home it was about that time of night.
Top roadie takes a call from Nan



Blogger Reflection Award: This award should make an individual reflect upon five bloggers who have been an encouragement, a source of love, impacted you in some way, and who have provided a Godly example. In other words, five dear bloggers whom, when you reflect upon them, you are filled with a sense of pride and joy…of knowing them and being blessed by them.

I have been awarded the Blogger Reflection award by Christina from Prince Vince who said this:

Shelley over at The Shamptons who has the cute twins Hannah and Kit, Hannah has DS, Kit not. She takes us cool little trips around her life and always has good reflections on life in general. Love it!


Now the rules for you wonderful bloggers
1. Copy this post.
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Go leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Put the award icon on your site

Now I think ALL of the bloggers below have already received this award but I don't care - this is my chance to let them know that I think they are great! Any on my side bar are worthy (and some lurking in my 'favourites' because I haven't put them on the side bar yet!)- Sharing common experiences and different perspectives. Creating opportunities for me to consider issues and to formulate my views on them - that is one of the things about blogland that is so much fun!

1. Michelle from Big Blueberry Eyes - I love checking in on Michelle and Kayla. Michelle is truly a remarkable and generous person. She always finds time to make encouraging comments on lots of posts - and not just mine. Thank you Michelle you are a treasure for the blogging community!

2. Jenifer at Pinwheels - Like me Jenifer has twins; one with a little extra. I love that she links so many news items to her blog - a great source of information. She also writes absolutley beautifully about major significant things in life and equally finds fabulous ways to reflect upon everyday 'small' things too. In fact she inspired me to share some homemade lemonade with the twins just today!

3. Emma at three times three - Emma has a wonderful blog where she shares some things about her beautiful children and offers thoughtful comments on a range of things from parenting to politics. She is a good writer and inpirational to boot!

4. Tara Marie at Emma Sage, has the most gorgeous looking blog of all!! No doubt becuase she takes amazing photoes of many beautiful things but her daughter Emma in particular. She often includes lovely verses and shares her perspective on things like homeschooling and inclusion in communities that I really enjoy being able to read.

5. Beth at Not that you Asked. Not that I am biased but Beth happens to have twins - one with something extra. She has a wonderful sense of humour that comes through on her blog. I like to read her ideas about parenting as she is clearly a great Mum and shares some wonderful views on this. She sometimes writes very powerfully too about Seth, one of her children.

A rose for you from our garden - it smelled as good as it looked!!

Thanks again Christina
This post was fun.